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Live well, die well - an international cohort study on experiences, concerns and preferences of patients in the last phase of life : the research protocol of the iLIVE study

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dc.contributor.author Yildiz, Berivan
dc.contributor.author Allan, Simon
dc.contributor.author Bakan, Misa
dc.contributor.author Barnestein-Fonseca, Pilar
dc.contributor.author Berger, Michael
dc.contributor.author Boughey, Mark
dc.contributor.author Christen, Andri
dc.contributor.author De Simone, Gustavo G.
dc.contributor.author Egloff, Martina
dc.contributor.author Ellershaw, John
dc.contributor.author Elsten, Eline E.C.M.
dc.contributor.author Eychmüller, Steffen
dc.contributor.author Fischer, Claudia
dc.contributor.author Fürst, Carl Johan
dc.contributor.author Geijteman, Eric C.T.
dc.contributor.author Goldraij, Gabriel
dc.contributor.author Goossensen, Anne
dc.contributor.author Hálfdánardóttir, Svandís Íris
dc.contributor.author Haugen, Dagny Faksvåg
dc.contributor.author Hedman, Christel
dc.contributor.author Hoppe, Tanja
dc.contributor.author Hughes, Rosemary
dc.contributor.author Iversen, Grethe Skorpen
dc.contributor.author Joshi, Melanie
dc.contributor.author Kodba-Ceh, Hana
dc.contributor.author Korfage, Ida J.
dc.contributor.author Lunder, Urska
dc.contributor.author Lüthi, Nora
dc.contributor.author Martín-Roselló, Maria Luisa
dc.contributor.author Mason, Stephen
dc.contributor.author Mcglinchey, Tamsin
dc.contributor.author Montilla, Silvi
dc.contributor.author Rasmussen, Birgit H.
dc.contributor.author Ruiz-Torreras, Inmaculada
dc.contributor.author Schelin, Maria E.C.
dc.contributor.author Sigurdardottir, Katrin Ruth
dc.contributor.author Sigurdardottir, Valgerdur
dc.contributor.author Simon, Judith
dc.contributor.author Smeding, Ruthmarijke
dc.contributor.author Solvåg, Kjersti
dc.contributor.author Strupp, Julia
dc.contributor.author Tripodoro, Vilma
dc.contributor.author Van Der Kuy, Hugo M.
dc.contributor.author Van Der Rijt, Carin C.D.
dc.contributor.author Van Zuylen, Lia
dc.contributor.author Veloso, Verónica I.
dc.contributor.author Vibora-Martin, Eva
dc.contributor.author Voltz, Raymond
dc.contributor.author Zambrano, Sofia C.
dc.contributor.author Van Der Heide, Agnes
dc.date.accessioned 2023-01-17T01:05:15Z
dc.date.available 2023-01-17T01:05:15Z
dc.date.issued 2022-08-01
dc.identifier.citation Yildiz , B , Allan , S , Bakan , M , Barnestein-Fonseca , P , Berger , M , Boughey , M , Christen , A , De Simone , G G , Egloff , M , Ellershaw , J , Elsten , E E C M , Eychmüller , S , Fischer , C , Fürst , C J , Geijteman , E C T , Goldraij , G , Goossensen , A , Hálfdánardóttir , S Í , Haugen , D F , Hedman , C , Hoppe , T , Hughes , R , Iversen , G S , Joshi , M , Kodba-Ceh , H , Korfage , I J , Lunder , U , Lüthi , N , Martín-Roselló , M L , Mason , S , Mcglinchey , T , Montilla , S , Rasmussen , B H , Ruiz-Torreras , I , Schelin , M E C , Sigurdardottir , K R , Sigurdardottir , V , Simon , J , Smeding , R , Solvåg , K , Strupp , J , Tripodoro , V , Van Der Kuy , H M , Van Der Rijt , C C D , Van Zuylen , L , Veloso , V I , Vibora-Martin , E , Voltz , R , Zambrano , S C & Van Der Heide , A 2022 , ' Live well, die well - an international cohort study on experiences, concerns and preferences of patients in the last phase of life : the research protocol of the iLIVE study ' , BMJ Open , vol. 12 , no. 8 , 057229 . https://doi.org/10.1136/bmjopen-2021-057229
dc.identifier.issn 2044-6055
dc.identifier.other 74544500
dc.identifier.other 5c3f4a66-3a84-4d0c-b7e5-c24a845bdb12
dc.identifier.other 85136038475
dc.identifier.uri https://hdl.handle.net/20.500.11815/3858
dc.description Funding Information: This work is supported by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no. 825731. Publisher Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.
dc.description.abstract Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085.
dc.format.extent 430683
dc.language.iso en
dc.relation.ispartofseries BMJ Open; 12(8)
dc.rights info:eu-repo/semantics/openAccess
dc.subject Krabbameinshjúkrun
dc.subject adult palliative care
dc.subject palliative care
dc.subject public health
dc.subject Medicine (all)
dc.title Live well, die well - an international cohort study on experiences, concerns and preferences of patients in the last phase of life : the research protocol of the iLIVE study
dc.type /dk/atira/pure/researchoutput/researchoutputtypes/contributiontojournal/article
dc.description.version Peer reviewed
dc.identifier.doi 10.1136/bmjopen-2021-057229
dc.relation.url http://www.scopus.com/inward/record.url?scp=85136038475&partnerID=8YFLogxK
dc.contributor.department Cancer Center

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